I believe that each of us is given one sentence at birth, and we spend the rest of our life trying to read that sentence and make sense of it.
Li Young Lee
Two artists and activists share their thoughts on COVID-19 and mutual care.
Part of the Theory + Practice series.
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We write from the strange world of coronavirus recovery. Relapse. Recuperation’s false dawns. We write from healing timelines wagged by long tails. A process that can feel raw, ridiculous, bewildering. Scary. Safe. Or not. We write of reconnecting and contending. We write from this time when COVID-19 in the past tense does not yet apply and uprisings demand a reckoning with centuries of white supremacy, structures of anti-Black racism, and vectors of violence and inequity. We write on COVID-19’s relentless plateaus and against the White House’s utter failure of its duties and abandonment of the people.
We write as but two of the masses of COVID-19 infected. There are now more than four million known cases of COVID-19 in the United States and over sixteen million worldwide. Pato was fortunate to access free testing in Los Angeles the second day it was offered by the county health department. Alex never saw a doctor in person in New York City. She did not get a test. We guess that many of the untested may not be known to those who are counting the infected and determining the official number of those constituted as recovered. How do we care for the recovering who were never known to be ill?
We—the COVID-19 infected—inhabit the upside-down space of getting better without a map. We occupy and probe our new reality almost always on our own. We do this as we are sick. We do this without universal healthcare. We do this with rent coming due. Past due. Not canceled. We do this as we are socially distanced from friends, families, and doctors. We do so in fear of the ventilator. We do so while mourning our dead. We do so while caring for someone else. We self-monitor for symptoms. Often what we feel and what our bodies tell us are not marked on the official but changing symptoms list. We don’t have a fever. We can breathe, albeit worse than when we were healthy. Now our breathing is tight, partial, maybe with a rattle. If we have an inhaler we hit it. Again. We take a Tylenol and a nap. Another day survived, another day when we didn’t succumb to what we know can be so much worse.
Our recovering hearts go out to the hospitalized and their friends and family. Our recovering lungs breathe a prayer and a scream for those who did not make it. Even as we are sick, so many others suffer more. As will be true for the majority of the infected, we hope that ours will be a slight course of COVID-19. Yet our experiences have been anything but mild. Our symptoms persist. Our ranks grow. But our stories are only barely heard. There is much news from the perspective of the worried well, doing all they can to not get infected. We see miraculous stories of the very ill who fight so hard and get better. There are obituaries for some of those we have lost.
But science is only beginning to learn about what we have been living—just how complex and uneven recovering with COVID-19 can be. Recovering: a process, ongoing. So different from that shifting beacon of being already-recovered. With COVID-19 it seems that sometimes there is no easy past tense, only a long and frustrating lingering. This means living with the virus’s episodic and unsettling resurgence. Trust and optimism easily erode here. Confusion reigns in this dispiriting place and time of coronavirus recovering. Health feels unfinished, uncertain, incomplete. This is a different kind of flattening. So much talk of spikes, surges, waves, plateaus, hotspots, curves. Just as regions and cities are now in varying stages of opening up—often only to close back down—we the infected are in various states of recovering. The country is nowhere near fully reopened, and we are nowhere near fully recovered. Instead we live in a messy and ambiguous unfolding.
When you’re afflicted with COVID-19, all of your corporeal compasses can skew. The virus, and your human response to it, make it hard to know whether what you are feeling is allergies, a mere cold, psychosomatic, or the very real effects of stress. This becomes particularly disorienting when you have suffered through clear symptoms that eventually recede, only to reemerge. We have found that learning from each other, listening to each other, having our symptoms reflected and augmented by those expressed by another are all forms of confirmation more validating than any test. COVID-19 sufferers find buddies to authenticate our lived experiences and what is patently true in our bodies. We experience daily, seemingly unceasing stresses and previously unfelt assaults.
One such affliction is the endless requests of people whom haven’t had COVID-19. They want to hear details about your symptoms and your recovery. The careful re-relaying of this to countless curious friends and strangers is itself exhausting and contra-healing. But we know that what can be felt like voyeuristic fascination from the well is always also mixed with care. This complicates a sense of community. We would rather share our symptoms between ourselves, or not at all, but this piece is about what it means, what it takes, how it looks, to make COVID-19 more public as it continues to perniciously proliferate.
In early March, Pato had a sore throat, sneezing, a cough with phlegm (not dry). At the time these were deemed signs that he was not infected with COVID-19. How little we knew. How much I would learn. Soon sleep unfriended me, no matter how much NyQuil or melatonin I offered in seduction and supplication. By April I stopped taking sleep aids because they made one part of me stumble toward collapse while my lungs clenched toward constriction. Late at night I’d be yanked between these extremes, needing desperately to sleep but unable to because my body anxiously wanted to breathe freely. In the bed I developed elaborate positions on my side with head elevated on multiple pillows, spine extended straight toward my feet, a cushion between my knees, free arm propped on hip away from weighing on lungs, torso torqued toward the ceiling, all in the hopes of inviting an open passage of air. I was exhausted during the day, and I dreaded the night.
In spring my emotional watershed was also reconfigured. I cried more than ever, weeps into sobs into hiccups into hopelessness. Patience, compassion, empathy, and generosity feel harder to come by now—for self, toward others. I’m regularly frustrated yet too tired to be enraged. Doubt is pervasive, trust beleaguered. Even my biological belly is a cauldron. I have had ongoing and uncomfortable gastro-intestinal issues: incessant bloating and gas, a few moments of diarrhea, daily bouts of inflammation, especially after any bits of sugar or gluten. On various nights dispersed across several weeks my gut wrenched with the telltale signs of food poisoning. It was COVID-19.
There have been neurological logjams as well. Focus, motivation, and cognizance have all been adversely affected. Short-term memory can be a struggle, trying to summarize what happened last week or even last night. Thoughts slide off the road and into the COVID-19 fog. Word recall gets jumbled, too. I see a few letters, hear some sounds, but not enough of a Scrabble word to play from the scramble. Once, in mid-June, I tried to order mapo tofu for my partner. It came out Maputo, the capital of Mozambique, where I was scheduled to contribute to a global, HIV prevention summit in late March. That historic gathering of activists was canceled due to COVID-19. Sometimes it feels like my mental dexterity has been too.
This unevenness is distressing. Old symptoms come back to say hi again, the chest compressed as cortisol courses after a nightmare about street fighting with metal poles during the uprising. These symptomatic spasms add to COVID-19’s emotional and psychic stress, its emergent and persistent scars. Prior to getting sick, Alex never knew her lungs were loose, fleshy, supple, porous until they weren’t. For over two weeks, my lungs felt like they were made of Styrofoam or asbestos. Flinty. Tight. Rigid. I never know my lungs had depth until I couldn’t access them. I’d take a deep breath, and it just stopped half way, like there was an artificial cutoff point just under the line of my breasts. I felt no pain; I kept breathing in and out; I went about my daily life, reduced.
So mostly, I was riddled by bouts of paranoia, fear, and self-doubt. Was this, right now, a turn for the worse? Was my breathing different? The stress of these thoughts would produce the very symptom under intense self-scrutiny, leading to a spiral of panicked breathing that most people with COVID-19 also list as a shared and gruesome, debilitating symptom. This wounded place is where our experiences align with but also differ from those who have been very ill. And the anxiety is shared with those who are hoping to never catch the coronavirus. Clearly, we need to create ways to talk within and across these disparate experiences with the COVIDoldrums and disasters. We must all contend with the virus.
But here’s one surefire way to close down any possible connection:
“You’re still sick?”
The unhelpful question comes often, from many directions, in one form or another. People ask us this with a mixture of shock and worry, admonishment and affection.
“That would put you outside the typical realm of recovery, and is very concerning,” Pato’s parent frets, their affection and rising anxiety oozing through the screen. “It must be mono,” Alex’s father says, trying to diagnose with love and care from afar, while also somehow expressing incredulousness and fear. Yes, we’re still sick. The still in this equation does not help. Forms of mutual care do.
“You’re still sick?” We are still sick. Or maybe better for now. Or perhaps feeling worse today. What helps in this state of ongoing recovering is your love and support, the soothing balm of mutual care. Regular, healthy meals. The oximeter. Cloth masks. Herbal tea. Tinctures. Ginger remedies. Fresh vegetables. Dried mushrooms and herbs for soup. Special biscuits. Chocolates. Recipes. Handwritten cards. Stickers. Texts, DMs, and emails (but without any pressure to respond). Forwards. Resources. Links. Video serenades. Video sillies. Video caresses. Essential oils. Tarot readings. Poems. Drawings. Zines. Money. Voice memos. Offerings of tenderness, encouragement, guidance, reassurance. Invitations to connect, to some day come and stay, to convalesce, recharge, replenish, prosper, play. Evocations of a mingled, healthier future, so hard to presume amid COVID-19’s haphazard and distancing haze.
We need this love and support, these proliferations of care. We also need to tell our stories. Listen to one other. Share what we have learned, both helpful and not so. Because in order for people to ask if you’re still sick and then act supportively with what they might learn, they have to know that you are not well. They have to know that many people are not well. Both of us have chosen to disclose our illness publicly, often, and in its many stages, times, and places. We have done so from early days in the pandemic, against a pervasive and stubborn stigma.
We are two people who have been struggling with the coronavirus. We are both also longtime AIDS activists, artists, and organizers. It was early AIDS activism that produced and then refined the rubrics, community, and analysis through which (HIV) disclosure was understood as political, strategically useful, and supported. Decades of related AIDS efforts, harm-reduction practices, and educational campaigns have built better visibility, connectedness, and care. These networks are still active, vital, and evolving in the face of HIV’s ongoing challenges. Coordinated action cultivates communal wellness. We can heed these lessons as we learn what it might mean to live well with COVID-19. It is obvious that activism, representation, and change matter, now more than ever.
In other work together—particularly as members of the What Would an HIV Doula Do? Collective (WWHIVDD)—we have written, talked, made art, and community about the similarity and differences between HIV and COVID-19. This led the collective to create a guide for making discourse more rigorous. In 27 Questions for Writers and Journalists to Consider When Writing about COVID-19 and HIV/AIDS, the Doulas note the following:
We have noticed the complexity of the AIDS crisis does not come through in most mainstream magazine and newspaper articles looking to draw a connection between the novel coronavirus and HIV. The two viruses are easily conflated without recognition of what the comparison, for example, elides or overlooks. AIDS is too often rendered as a 20th century American pandemic that impacted primarily middle class, white, urban east and west coast gay cisgender men.
Currently there are nearly thirty-eight million people living with HIV worldwide. It is hardly a thing of the past. Viruses thrive in the chasms of inequity. Understanding this is vital to surviving and transforming our current upheaval.
Doulas hold space for people during times of transition. The collective also sought to enact this practice through a zine that explores the question, “What Does A COVID-19 Doula Do?” In Alex’s introduction to that project, she reflects on artmaking, community, care, and disclosure as the similarities between the viruses that can help, if not heal, us:
As someone who made art, activism, and community during one height of the AIDS crisis in NYC in the late 1980s, and who continues to do that work today during another juncture of the AIDS pandemic, I begin by attesting that AIDS and COVID have little in common, outside the fact that they both start as viruses, which are highly communicable, potentially deadly, frightening, initially little-understood, and prone to the dangerous distortions of mis-, under-, and over-reporting. But, in this limited commonality there is something vital. Shared between the pandemics is the role of art, activism, community-making, and related projects of care. I am certain that in times and places of viral illness, our art, activism, community-making, and care allow us access to the dignity of our own voice and knowledge; to correct and add to limited or distorted information; to connect to others who share our needs and outlooks; to render beauty, pain, anger and more; to make and share demands; and to enter what we knew, did, and want into history.
Our longstanding HIV networks have remained active. Alex was recently interviewed by Lauren Herold for Autostraddle along with fellow ACT-UP alum Ann Northrop. In thinking about the relationship between AIDS and COVID-19, Alex notes, “I believe that people are comparing the two of them because they are viral illnesses that are identifiably proximate to trauma and fear and suffering.” She goes on to list a variety of differences between the two pandemics: mortality rates, modes of transmission, and vastly different response times from medical officials, politicians, and the news media.
Pato has engaged in HIV prevention efforts with queer communities of color since 1994, including cultural production such as comic books, billboard campaigns, art journals, and exhibitions. As an extension of this longstanding creative wellness practice, in March Pato began using his phone to make the photographs that we share throughout this piece. He did so as a way of rendering illness and self-care. This was a form of journaling that then became communal through his long COVID-19 musings on social media. Pato publicly disclosed his positive test results on March 28, the day after he received them.
Yet it seems that in this still-nascent stage of the COVID-19 crisis, many people infected with the virus are not disclosing. They worry about worrying others. They worry about being shunned and further isolated. They worry about stigma. They fear losing their already tenuous jobs. Or not finding a new one. Still other folks are unable or afraid to test. Some live too far away from testing sites. For some, transportation is unreliable or altogether unavailable. Some fear surveillance around immigration status. Many are overwhelmed by the waves of questions, scrutiny, and criticism that might come their way. And while some among us are diagnosed with COVID-19, others are not, while others are misdiagnosed, and then it’s not even clear what a diagnosis might mean.
All of this is turbocharged by the raging pandemics of poverty and racism. COVID-19 is disproportionately impacting Black, Indigenous, and Latinx communities. Pato and compañerxs have come to call it livin’ la COVIDa loca. The ’rona can make existence feel even more fragile and precarious. It can cause the possibility of thriving to feel eclipsed by the exhaustion of surviving. This is what makes networks of imagination, action, resilience, and mutual care so crucial, particularly in the face of federal disregard, chaos, and neglect.
We must learn to speak, represent, and connect by first finding one another, even as we don’t yet fully understand our illness or recovery, or perhaps because we can’t yet know. As more and more people who are infected with the coronavirus are comparing experiences, gathering in online support groups, exchanging insights and sharing resources, speaking out, could this be the start of what COVID-19 communities look like? Might this social medicine be a key ingredient for our recovering? “Are we still sick?” can be more than a wobbly, worried question. It must also be a disclosure of awareness. A declaration of love and action. A shared invitation to be well. We are still sick, and we are ready to act.
Pato Hebert is an artist, teacher, and organizer. His work explores the aesthetics, ethics, and poetics of interconnectedness. He has exhibited in galleries, museums, and community spaces around the world. He has also worked in grassroots HIV prevention initiatives with queer communities of color since 1994. He teaches as an Associate Arts Professor in the Department of Art and Public Policy at Tisch School of the Arts, New York University. You can follow him on Instagram @volandito.
Dr. Alexandra Juhasz is Distinguished Professor of Film at Brooklyn College, CUNY. Author and/or editor since 1995 of scholarly books on activist media in light of AIDS, black lesbian and queer representation, feminism, and digital culture, she also makes videotapes on feminist issues from AIDS to teen pregnancy as well as producing the fake documentaries The Watermelon Woman (Cheryl Dunye, 1997) and The Owls (Cheryl Dunye, 2010). Her current work is on and about feminist internet culture and AIDS with two recent books: AIDS and the Distribution of Crises, co-edited with Jih-Fei Cheng and Nishant Shahani (Duke University Press, 2020), and We Are Having This Conversation Now: The Times of AIDS Cultural Production, with Ted Kerr (forthcoming from Duke University Press in 2021).
Theory + Practice is a series supported by the Shelley & Donald Rubin Foundation.
I believe that each of us is given one sentence at birth, and we spend the rest of our life trying to read that sentence and make sense of it.
Li Young Lee